patient experience

In 2015, when we researched and wrote Should Money Come into It?, a tool for helping to decide whether to pay patient- and caregiver-engagement participants, we knew it was a hot topic. In fact, it received a lot of attention at launch and remains one of our most popular resources.

Two years later, as the patient and family caregiver engagement movement continues to build momentum, we’re seeing renewed interest in this report. It’s clear that whether to pay patient and caregiver participants, as a form of recognition, is something that many in the health and social sectors are grappling with. This can only be defined as notable progress, and we’re thrilled that our paper is serving as a useful roadmap for them on this issue.

This report isn’t only striking a chord in Canada—it’s resonating beyond our borders as well. First came a request from a patient experience online library in the UK to promote it on their homepage and make it available on their website. Then came a shout-out to the report in a recent #BMJDebate tweetchat, followed by a BMJ blog post in advance of the next tweetchat (#BMJDebate) that is happening at noon EST on July 13, 2017 on the Terms of engagement for patient participation.

Given the report’s currency—pun intended—we wanted to highlight again some of the key points and underlying reasons we created it in the first place.

It’s important to remember that recognition and appreciation for people’s time and expertise comes in many forms, and compensation is only one of them. But the truth is, for some, participation isn’t an option without compensation.

Ever since patients and caregivers have been taking seats at the tables where planning, discussions and reviews are being done at hospitals and other health care organizations, the inequity has been clear. At the Change Foundation, we strongly believe that covering expenses for them to participate, and share their expertise—often based on very personal, sometimes emotional stories and experiences—is a given. In fact, we would argue those expenses should extend beyond the typical—mileage, parking, meals—to include things like child care, respite care, personal support to get to meetings, even dog sitting. Basically, we believe when we are asking people to share their expertise as a volunteer, the least we can do is make sure they aren’t out of pocket for any expenses they have to cover to be able to participate.

But at the Change Foundation, we also believe that covering only expenses is sometimes not enough. A key principle of co-design is that patients and caregivers are equal partners in the process—yet there’s a big elephant in the room. We are asking patients and caregivers to commit the same amount of time and energy—sometimes more—as paid employees. We believe that, in certain situations, patients, families and caregivers should also be offered compensation for their time and expertise.

The truth is not all patients and caregivers want to be paid, but that shouldn’t stop organizations from offering payment. In fact, we’ve had experiences where payment was returned, or payments were donated back to the organization. It’s much better to have this happen and give the patient or caregiver the option, than to not offer payment at all.

As patient and caregiver engagement, and co-design opportunities, become much more commonplace, we think the discussion about compensation needs to get more attention. Each organization needs to grapple with it independently. We are happy that our framework—which we know isn’t perfect, but we believe is a solid starting point—is serving as a spark to have the discussion.

In Ontario, more than 620 long-term care homes provide round-the-clock nursing, medical, social and personal care for more than 78,000 residents at any one time. In recent years, long-term care homes have been increasing their efforts to work collaboratively with system partners, staff, residents and families to enhance the quality of care and quality of life for their communities.

One of the patient engagement models used to do this is Residents Councils and Family Councils. However, due to being mandated under the Long-Term Care Homes Act (2007), these Long-Term Care Councils have caused some to question their authenticity and contribution.

After surveying over 2,500 long-term care residents, family members, council staff assistants and administrators, the Foundation found that these councils are perceived positively by their communities and are seen as having real impacts as reported in Enhancing Care, Enhancing Life.

Specifically, four key findings emerged from the surveys:

Enhancing the quality of life, enhancing the quality of care, and information sharing we identified as the three main roles councils played;

Residents and family members participating on councils have a much clearer understanding of what the councils accomplish and believe that they fulfil their roles;

Despite councils being mandated by the provincial government, council staff assistants and administrators see the value, importance and impact of having a council; and

Improvements in relationships are mainly seen between residents and staff.

These four key findings are an overview of some of the important big picture matters that councils address and deal with. These findings are also significant because no other independent or arms-length organization has reviewed the state of these councils in such detail.

However, resident’s councils and family councils may only be an initial step in the long-term care sector’s patient- and family-centred journey. In Insights into Quality Improvement: Long-Term Care, Health Quality Ontario (HQO) suggests that truly listening to residents and families means “moving beyond the existing resident and family councils to more co-leadership and participation in quality improvement activities” (pg. 29, HQO, 2016). Furthermore, a key component of continuous quality improvement is incorporating the “voice of the customer”—i.e. residents and families (HQO, 2016). Knowing the degree to which councils are able to provide this voice, and where successes and pitfalls lie, can inform others on how to optimize their councils and experiences for residents and family members.

The findings from Enhancing Care, Enhancing Life and HQO’s recent report set the tone for the next phase of our Long-Term Care Resident Councils and Family Councils project.

Through a series of five case studies with long-term care homes from across Ontario, the Foundation will address a number of key questions that emerged from the surveys such as: why are councils fundraising, how are councils fundraising, what does quality look like, and how do councils contribute to quality improvement. Selected from an open call to the sector, homes being featured in the case studies are currently participating on a voluntary basis through one-on-one interviewing and focus groups.

John’s Campaign was born out of Nicci Gerrard’s experience watching her father John’s rapid decline during an extended hospital stay. At 86, John, who had been living with dementia for over a decade, was brought into hospital to be treated for debilitating leg ulcers. During his stay, an outbreak of norovirus within the hospital kept Nicci and the rest of John’s family from visiting. As time went on, John’s cognitive and physical condition began to decline rapidly and he had little contact with any family or friends. Five weeks later, although fully recovered from his leg ulcers, John left the hospital immobile frail and unable to perform even the simplest tasks he had been able to partake in just five weeks earlier.

For Nicci, seeing this change in her father was heartbreaking. However, what was more shocking was just how common this experience was for people living with dementia and their families. Recognizing this as an important issue, Nicci took action.

Fortunately, she didn’t have to look far for a model that works. In the pediatric system, parents are encouraged to stay with their children in hospital to help them feel safe and comfortable in a strange environment. But Nicci wondered: why not take a similar approach for dementia patients who may become confused, scared, or agitated when left alone in hospital?

Like that, John’s Campaign was born.

The premise of the campaign is simple: open visiting hours for people providing care for someone with dementia. Their tagline “Stay With Me” calls for families and caregivers of people with dementia to have the same rights as the parents of sick children, and be allowed to remain in hospital for as many hours as needed. It may sound simple, but for caregivers it makes a world of difference.

“Carers should be allowed to stay with those suffering from dementia. It should not be a duty but an inalienable right, a matter of moral decency and simple human kindness,”

– Nicci Gerrard

While the campaign is primarily centred around an influential presence on Twitter (@JohnCampaign), in just over two years, 407 hospitals have joined a growing coalition that supports a more carer-friendly healthcare environment. Though the Campaign’s main focus is to get hospitals to sign on for open visiting hours, this has also led to a much broader system-wide commitment to recognizing and meeting the needs of carers.

The campaign has achieved such unprecedented success and momentum that in early October 2016 it hosted its first conference. With over 150 health care providers in attendance, and countless caregivers and family supporters, the conference allowed families to share their experiences and unite their voices on the major issues the campaign addresses. It also provided a much needed forum to discuss what’s next for this simple yet transformative cause.

John’s Campaign first came to the attention of The Change Foundation during a recent trip to the UK to meet with caregiver-focused organizations. During the trip, Foundation staff, including President and CEO Cathy Fooks, was struck by the campaign’s power to create system-level change through a grassroots movement.

As The Change Foundation partners with Ontario health care delivery/service organizations to actively integrate, recognize and support caregivers in the important role they play within the health care system, this movement serves as an important reminder of the powerful influence grassroots action can have in shaping and changing formal health care structures.

Just as we welcome a new season and warm weather returns, we at The Change Foundation (TCF) are feeling very energized as we move into new phases of our work.

Doing a deep dive into family caregiver issues through grassroots engagement and research has underscored for us just how imperative it is that we continue to focus on integrating and supporting family caregivers as a way to improve the patient and family experience.

At TCF, we believe that this mix of strong engagement and strong research also allows for a unique, more inclusive perspective on how change can be achieved in health care.

Look no further than the past six months as an example, which has seen us release a number of research publications, reach out to both family caregivers and health providers (click to learn more), and continue to share our knowledge at a number of conferences and stakeholder meetings. These kinds of activities are the crux of our approach to evolve Ontario’s health care sector.

Another good example can easily be seen with our Shedding New Light report series. Researched and written by family caregiver Sara Shearkhani, Shedding New Light offers a glimpse into Sara’s caregiving journey, and her struggle with evolving personal responsibilities. These reflections stand alongside a literature review on the stages of caregiving. Overall, the reports serve as important examples of how evidence and lived experience can be used to tell a meaningful caregiving story.

Although it’s encouraging to see evolving literature like this, the more we learn, the more we understand just how much work still needs to be done.

This is especially important from a policy perspective. In this issue’s commentary piece, Lori Hale and Stephanie Hylmar bring forward four key emerging themes for increased stakeholder consideration and action, as identified through The Caring Experience project. These themes are directly informed form our engagement with both family caregivers and Ontario’s health providers and serve as an important starting point for TCF’s next phase of strategic work.

Furthermore, at the launch of our latest report, A Profile of Family Caregivers in Ontario, we issued a call to action for ourselves for the next phase of our strategic plan. Coinciding with the release of that report, dedicated planning has started at TCF to develop the next round of funding opportunities and partnerships aimed at improving family caregiver experiences.

Now is the time for introspection for The Change Foundation to fully realize these opportunities. More importantly, it’s an added chance to ask ourselves how we can continue to be Ontario’s neutral sandbox for positive health care collaboration.

Whatever funding opportunities are developed, they will undeniably involve both family caregivers and health providers as equal partners, with a focus on creating made-in-Ontario solutions that will lead the way in improving caregiver and patient experiences in the province.

With this approach, we can continue to be the catalyst for change in Ontario health care.

In The Change Foundation’s Journey Into the World of Patient Experience, CEO Cathy Fooks provides high-level reflections on our 2010–2013 strategic journey, focusing on the lived experiences of patients and caregivers to drive system change. She says, “We decided we’d better listen to patients – maybe it would change how we saw the world of Ontario healthcare. We did listen. And it did.”

Our 2011 Loud and Clearconsultations crystallized the difficulties seniors with chronic conditions have encountered in navigating the system. Fooks’s reflections outline how those consultations and subsequent research, policy analysis and patient engagement work led us to develop two signature projects, launched in 2012:Northumberland PATHandPANORAMA.

WHAT’S BEING SAID

Stephane is a young caregiver who assists with caring for his younger brother. Don has been caring for his wife since her diagnosis with early onset Alzheimer’s 5 years ago.
Hear from Stephane & Don on what their #caregiving experiences have been like: bit.ly/2VuxJCKpic.twitter.com/FfZTG9IqkE

Have you registered for our upcoming webinar on Including Caregiver ID initiatives as part of Family Presence and Open Visiting Policies in Ontario?
The webinar takes place on June 6th from 12:30-1:30 p.m. Register here: bit.ly/2Wuto3qpic.twitter.com/UTo09kDe1y

While 64% of #caregivers surveyed said they were happy to step in and provide care, 18% felt intimidated by what was expected of them.
Learn more about how caregivers feel about caregiving in our Spotlight on Ontario's Caregivers report: bit.ly/2TrwMe8pic.twitter.com/dl3dwlX8MQ

'Family presence results in better patient outcomes, it is that simple."
Are you looking to implement family presence or open visiting policy in our healthcare setting? Hear from those who do and their experiences in our latest report: bit.ly/2Wuto3qpic.twitter.com/pYCMRCBVqq

Be engaged. Sign up for our newsletter, Top of Mind, and let us keep you informed on what the Foundation is doing to influence positive change in Ontario’s health care system.

Looking for more information on Foundation projects? Contact us to find out how we’re informing positive change in Ontario’s health care system.

Promoting a positive evolution in Ontario’s health care system by engaging patients, family caregivers and health providers to explore contemporary health care issues.